PubMed · 10851698
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M Eagle. 2000. Repression and "repressive style".. https://pubmed.ncbi.nlm.nih.gov/10851698/
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Sibling illness may contribute to an increased risk of adjustment problems in healthy siblings. Previous studies have reported a variety of effects on healthy individuals who have an ill sibling, but the psychosocial effects of treatable inherited disease on healthy siblings have not yet been investigated. We report the results of a survey study conducted in families with both unaffected and affected children with classic phenylketonuria (PKU), an inherited inborn error of metabolism. The survey included a knowledge test about PKU, and four previously validated instruments designed to assess psychosocial adjustment of unaffected siblings compared to age and sex matched norms. The responses revealed that unaffected adolescent and adult siblings had gaps in their knowledge about the genetic basis of PKU, and had evidence for the presence of adverse psychosocial sequelae. These findings suggest a role for genetic services providers, including genetic counselors, in assisting all members of a family adjust, when the diagnosis of an inborn error of metabolism has been made.
Since predictive testing has been available for Huntington disease (HD) and similar adult-onset neurodegenerative disorders, research into the psychosocial impact of test results has focussed on those receiving results, and to a lesser extent, on their partners. Few studies have examined the impact of predictive testing on the couple relationship, particularly from the perspective of family systems theory. This longitudinal study compared the level of marital adjustment of 23 couples in which the at-risk partner is undergoing predictive testing for HD (the testing group) with that of 20 couples in which the at-risk partner is not undergoing testing (the non-testing group). Participating couples completed a relationship measure, the Dyadic Adjustment Scale, at baseline and on two subsequent occasions. Using non-parametric tests, comparisons were made at each phase between the couple scores of the testing and non-testing groups but no significant differences were found in the levels of marital adjustment. Within the testing group the same comparisons were made for the carrier and non-carrier subgroups, and a significant difference was found at the final phase. There was an increase in the level of marital adjustment for the carrier group and a decrease for the non-carrier group. Together with trends observed in the data, this finding suggests a need for greater attention to be given to the potential impact of predictive testing on the couple relationship. Offering couples pre-result relationship assessment and referral for couple therapy, if warranted, may enhance the quality of professional support during the predictive testing process.
STUDY DESIGN: Observational prospective study. OBJECTIVE: To assess the reliability, validity, and responsiveness of the French version of the Fear Avoidance Belief Questionnaire. SUMMARY OF BACKGROUND DATA: Fear, avoidance attitudes, and belief play pivotal roles in disability perceived by patients with chronic low back pain. The Fear Avoidance Belief Questionnaire is a two-part questionnaire assessing fear, avoidance, and beliefs about professional activity and physical activity. METHODS: The Fear Avoidance Belief Questionnaire was translated by use of the forward and backward translation procedure. Test-retest reliability was assessed in 31 patients (Group 1) with the intraclass correlation coefficient and the Bland and Altman method. Construct validity was assessed in two groups of patients (Group 2, n = 147; Group 3, n = 70) with the Spearman rank correlation coefficient and factor analysis. Responsiveness was assessed in Group 3, after they underwent a functional restoration program, by the effect size and the standardized response mean. RESULTS: Test-retest reliability was good, with an intra-class correlation coefficient value of 0.88 and 0.72 for fear, avoidance, and beliefs about professional activity and physical activity, respectively. Use of the Bland and Altman method produced a homogeneous distribution of the differences, with no systematic trend observed. The expected divergent validity was observed in Groups 2 and 3. Factor analysis extracted four factors in Group 2 and the two original factors of the English Fear Avoidance Belief Questionnaire in Group 3. The lowest effect size and standardized response mean values (0.30 and 0.31, respectively) were observed with the fear, avoidance, and beliefs about professional activity. CONCLUSIONS: The psychometric properties (test-retest reliability, construct validity, and responsiveness) of the French version of the Fear Avoidance Belief Questionnaire are acceptable, and fear, avoidance, and belief can now be assessed in French-speaking patients with low back pain.